The Lost Years by Holly O'Brien.
My name is Holly, I am 21 and I have M.E. I am originally from a small village in County Kilkenny, Ireland but have lived most of my life in England. The past few years have been spent in Chester, where I am currently in the final year of my degree.
M.E. is an illness that has its suffers thinking about the past, present and future simultaneously; I grieve for the old me, while managing the situation I am currently in, and looking into the future and questioning, will I ever be well enough?
I am a determined person, a positive trait but also my downfall. I work hard to achieve what I want, too hard and consequentially my health can suffer. I am a pusher, I push my body and then I break, every time I break another part of me is lost.
I don’t quite know how long I have had M.E. I started showing symptoms from about 16, but as many sufferers with M.E. know it can take years to get a diagnosis. It wasn’t helped that I showed symptoms of another chronic illness as well, fibromyalgia. These symptoms were present from the age of 13, although once again this took years to be diagnosed.
The years searching for answers are lost years, I lost nearly every part of me in that search. Doctors would run tests but nothing would show up, eventually it was assumed all these symptoms were in my head. I lost my belief in myself, I lost me.
University
My first year of University was uneventful. I tried my best to shield my illness from my new friends, fearing if they found out they would only see M.E and not me. Previous experience had taught me it is hard for people who do not have the illness to truly understand the impact it has and so eventually I gave up trying to explain.
I shielded the illness to the best of my ability but by this point M.E. was part of me and trying to hide it meant I was hiding myself. I had attempted to join a sports society as a form of denial although I only lasted a few weeks and it became clear that I would not be able to manage it.
In January 2018 I decided I wanted to make a change, there was a lot going on in my personal life, but I wanted to really live and distance myself from that, so I booked a trip to Scotland with my friend for our mid-term.
This was an eventful trip where I attempted to climb Arthurs Seat, but we didn’t make it. My friend also had bronchitis so could barely breathe and I could feel the fatigue and struggled with every step. This left me with a sense of failure and loss.
To the best of my ability I repressed these emotions instead of actually dealing with them and when arriving back in Chester I did my best to carry on like normal. However, a few months later and the M.E. took over once again.
Diagnosis
My daily routine was hard. If I got out of bed, showered and got dressed I would then have to lie down for 20 minutes to recover. At this point I wasn’t living I was just existing.
However, I persevered, and it seemed to pay off. I got to meet a lot of new people that a massive effect on my life and resulted in positive changes. I felt like I was gaining back what I had lost.
The second year of University was a lot better for me, and it was when I got my official diagnosis of M.E. It made me feel at peace and the self-hatred of not being like a regular 19-year-old faded.
I also started working with it instead of against it. I was still careful but I was able to achieve things that I never thought I would. I managed to explore new places and go on walks without payback being horrific.
The Stepping Stones in Dovedale is now one of my favourite places as its where I learnt to trust myself once more, and I started to build myself up and to live again. I did have my flares but also my positive moments for the following months.
By February 2019 I was back in Edinburgh. I had a wonderful time, I was able to walk along the beach, look in shops and even climbed Arthurs Seat. With the help of the people I went away with I managed to do all the activities and more and was very happy. I still had an illness and experienced some pay back but it was worth it – I had gained so many happy memories.
May 2019 was a very busy month, a good month for me personally but in hindsight it is a month that resulted in a loss of health. I was doing a placement in a secondary school; I was loving it and really ignited my flame for teaching again.
I had started running and was aiming for the 2019 Dublin half marathon, in memory of my dad who passed when I was a baby and my uncle who had passed the previous year. I also had two trips home to Ireland that month and for happy reasons, something which had seemed few and far between.
I was naturally worn down by the end of the month and to add to it, I had started my first job waitressing – something I hadn’t done for a few years. June on the other hand was a hard month.
To start with I was exhausted, but I was going on my first holiday for a long time and was excited. I was in denial that M.E. had flared and convinced myself that going away for a week would solve all the problems.
Complications
For the first few days it did but upon arrival back into England I banged my head resulting in a concussion.
A few days after the concussion I went back to work but something was not right, everything was moving slowly around me, holding a glass was a difficult task as it felt so heavy. In the end I was back in hospital again as I was vomiting blood.
The next thing I knew I was unable to stand or walk without a lot of support. At this moment, I had to quit my job, hang up my running shoes (again) and move back home as I wouldn’t have been able to look after myself properly. I lost the life I had managed to gain.
Last July, I had finally started to be able to walk and upon moving back to Kilkenny I was seeing a physio to try and gain strength back.
This worked and by August I found myself cycling from Kilmacthomas to Waterford a total of 20km!
However, in the middle of August I found myself vomiting blood again and once again I could not walk without support. In the end my GP prescribed crutches to help. To people reading this, it probably sounds like great, with crutches you can support yourself but that wasn’t the case.
I was embarrassed by them and didn’t want to leave my house in case people saw them. I don’t look sick, why would I be using them? Eventually I learned to just tell people it was a sprained ankle and get on with it.
However, the anxiety remained, and I felt more isolated from people my own age.
Upon going back to Chester, I was still on my crutches, but it did make life easier in some ways, trips to Derby were easier, I could move and did have some freedom back.
I also discovered the dangers of setting unrealistic goals. I was going away at the end of September and was adamant I would not need my crutches by then.
Unfortunately as the time to go got closer, I still was unable to walk unaided and it was clear I had to bring them.
On one hand they did help me enjoy the holiday more, and I was walking further without them. But when I returned to England my confidence was destroyed as I had not managed to meet my goal.
Support
I started my final year of University in the worse state I had been in.
Luckily, I have so many amazing friends that have helped, from carrying bags that I couldn’t, to listening to me vent and frustrate and more recently just cry it out.
Additionally, I have a loving family who would do anything if I needed them to (including making multiple night sailings from Dublin to make sure I am better!)
Final year was stressful, I had to have an endoscopy done under sedation which resulted in a flare, except this time I couldn’t sleep. In the 21 years I had never suffered insomnia but for a period of about 7 weeks I would not sleep well at all. I would feel exhausted, and drained my body was struggling but no matter what I just couldn’t sleep. I felt even more helpless, anxious and isolated.
At this point I made the decision to talk to a counsellor to try and help me process my emotions to do with M.E. It was a difficult process and not a quick fix. I still lost friends as I was unable to get my confidence back.
It took months but I can say I am no longer as anxious; I have some confidence and am starting to be more open and to feel less isolated. I am more positive for the future and my strength is returning. And, I have managed to go the past 6 weeks without crutches!
At several points in my illness I have allowed M.E. to take me away and this year I decided that was no longer going to be the case and now a few months into 2020 I am starting to be me again; I am looking forward.
I am not perfect, but I am learning not to let M.E. be in control. I have lost too much over the years. I hope my story helps to brings awareness of M.E. to more people as the more that know about it the easier it will be for those who suffer.
We won’t have to suffer alone. We will have M.E. but we will still be ourselves, a gift we cannot afford to keep losing.
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